Noma is a little understood, rapidly progressing gangrenous infection of the oral cavity, associated with a reported 90% mortality rate [1]. Noma mostly affects children under the age of five, and those who survive have severe facial disfigurements (2) and multiple physical impairments such as difficulty eating, seeing and breathing. Noma can also cause stigmatization due to these impairments [2]. The incidence of Noma is estimated to be 6.4 per 1000 children [3], and the World Health Organisation estimate that 140 000 children contract Noma each year [4]. Noma is thought to be most prevalent along the Noma belt which stretches from Senegal to Ethiopia [2], however Noma cases have recently been reported in the United Kingdom[5], United States [6], Afghanistan [7], South Korea [8] and Laos [9]. Little is known about Noma as the majority of cases live in underserved areas, difficult to reach locations, the mortality rate is high and the disease often goes undiagnosed. Noma starts as an inflammation of the gums, similar to a mouth ulcer, which then leads to the rapid destruction (one week [4]) of the jaw, lip, cheek, nose and sometimes eye [10]. During the first active stages of the disease, antibiotic treatment and wound dressing are effective forms of care, once Noma becomes inactive, patients can survive into adulthood but require extensive reconstructive surgery. The pathogenic cause of Noma is unknown [4]. Noma typifies the complex interactions between extreme poverty, severe malnutrition, poor oral hygiene practices, limited access to high quality health care [7] and co-morbidities with infections such as measles [1,2,7,11–18], malignancies, particularly leukaemia [4,11–13,16,17,19], Human Immunodeficiency Virus (HIV) [2,4–7,9,13,17–20] and Crohn’s Disease [8]. Long term outcomes of Noma treatment are difficult to ascertain due to inconsistent follow up because of the remote locations of home villages of patients and difficulties with access to health care assessments. A 2010 paper on the outcome of trismus release in Noma patients in northwest Nigeria (patients from the Noma Children’s Hospital), showed that the long term results of trismus release were poor with only 39% of patients showing improvement in mouth opening [21]. This shows a need to carefully monitor outcomes to try to ascertain what factors favour positive outcomes so that these can be the focus of treatment plans. Médecins Sans Frontières (MSF) runs programs at the Noma Children’s Hospital (NCH) in Sokoto, northern Nigeria, and currently assists with surgical interventions for the patients who have survived and sought care at the hospital. Community outreach, active case finding, follow up assessments and prevention programming are also supported by MSF. These projects place MSF in a unique position to study Noma, and to add to the scant body of knowledge around the disease. In 2017, MSF conducted a comprehensive descriptive study of the Noma patients treated since 2015 in the project in addition to a case control study for Noma patients. Results from these studies indicated that current routine data collection was sub-optimal. In order to be able to track clinical outcomes of Noma patients, more robust data collection and longer term follow up is needed. The current study aims to address one of the highlighted gaps from the 2017 case review which is the absence of comprehensive information on surgeries performed (including techniques) and clinical outcomes of Noma patients after surgery (in terms of surgical, anaesthesia-related and post-surgical complications, including infections) and outcome information after discharge from the hospital. Additionally, it will aim to establish better ways in which to ensure that current medical data on previous medical and vaccination history of each individual Noma patient are being accurately collected and analysed. Only by implementing a systematic and controlled method of data collection in conjunction with systematic follow up will our medical teams learn from current interventions and be able to use these recommendations for improved clinical management.

Background Noma is an orofacial gangrene that rapidly eats away at the hard and soft tissue as well as the bones in the face. Noma has a 90% mortality rate, and the disease affects mostly children under the age of 5. Little is known about Noma as the majority of cases live in underserved, difficult to reach locations. MSF runs projects at the Noma Children’s Hospital in Sokoto, northern Nigeria and currently assists with surgical interventions for the patients who have survived and sought care at the hospital. Community outreach and active case finding are also taking place. These projects place MSF in a unique position to study Noma, and to add to the scant body of knowledge around the disease. Aims and objectives Aim To identify risk factors for Noma in north west Nigeria in terms of epidemiological (demographic characteristics, medical history), socio-economic-behavioural aspects and access to health care in order to better guide existing prevention strategies. Specific objectives 1. To understand concepts and perceptions of Noma within the population of northwestern Nigeria, specifically those affected (caretakers of Noma cases) by the disease, and controls matching these cases. To describe the epidemiological profile of all cases of Noma that have been treated at the MSF Noma Children’s Hospital from August 2015 until June 2016; 2. To describe the current Noma patient’s clinical history before the onset of the disease, the start of the disease and the care/treatment sought as well as the impact of Noma on the patient; 3. To assess Noma risk factors by comparing cases enrolled at the Noma Children’s Hospital and controls matched to cases by sex, age, and village of residence; All of these objectives are in order to assess if there are intervention opportunities in the unique Nigerian setting that could prevent further Noma case development. Methods 1) Qualitative phase: focus groups will take place with care takers (guardians or parents) of cases as well as key informant interviews with health care workers to better understand the local concepts, vocabulary and expressions used to describe Noma in this part of Nigeria. 2) Descriptive epidemiology: description of all available medical, nutritional and mental health data associated with the Noma patients operated on at the Noma Children’s Hospital over the last year. 3) Case control study: assessing risk factors for Noma using care takers of cases recruited from the Noma Children’s Hospital and care takers of controls that are recruited from cases village of residence and matched by age and sex. Outcomes • Initiate the MSF operational research agenda around Noma in Nigeria; • Improved understanding of local beliefs, traditions and language used to describe Noma; • Improved understanding of Noma patients at the Sokoto Children’s hospital; • Identification of preventable risk factors for Noma development in our patients; • Integration of information obtained into outreach programming, improved community engagements, options for preventative campaigns and overall improved clinical and mental health care of Noma patients and caretakers in the MSF project.

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